A glimpse into my daily life

Most people know I'm sick, but the vast majority of those people don't know what the hell is wrong with me. If you pay attention to my Facebook news feed, you see some things pop up from time to time about Ehlers-Danlos Syndrome, or EDS.

I was diagnosed with EDS several months ago, after fighting a year to get the diagnosis so I could get vital medication covered by my insurance company.

If you Google EDS, you'll probably get a brief overview of the condition. The main symptom people associate with EDS is joints that dislocate more easily than regular ones. They dislocate easily because our bodies don't produce enough collagen, so our connective tissue is loose. It's so loose that it doesn't hold in our joints. This, though not life-threatening, is very painful.

Once people get that answer, they don't usually look beyond it to see what else the disease involves. Unfortunately, there's so much more to it, much of which is life-threatening.

One of the biggest problems for me is my gastrointestinal system. Everything in your body that has collagen in it can be affected by EDS, and my GI system is almost nonfunctional. My stomach is completely paralyzed. Most people's stomachs work to push food on to the rest of their bodies. Mine quit on me a couple of years ago. I found this out by doing a gastric emptying test. While most people with some paralysis in their stomach can still empty out about half of their stomach contents, I was only emptying one percent. My doctor said that one percent wasn't even due to my stomach working a little bit but to gravity.

So in January, I underwent my third surgery in three years and had an implant placed into my abdomen. I call him Chuck. Chuck is supposed to force my stomach, through electronic means, to empty. It's like a pacemaker for your stomach. It jumpstarts it. Only this implant has to keep shocking my stomach to get it to continue to work. It can sometimes be very painful. I get pain from my stomach all the way up my left shoulder (the implant is in my left side). The only thing that relieves this intense pain is lying on my stomach. That's hard to do when you're watching two toddlers!

If this doesn't end up working (and it hasn't been working very well), my next step is a feeding tube. Even with the implant, I'm still only emptying out about 20 percent of my stomach contents. The rest, I throw up. So every day, I vomit several times a day.

The EDS affects your vascular system, as well. There are six types of EDS, and I have Type III, which is hypermobility EDS. But I still have characteristics of the vascular type, which I've never been tested for because I can't afford a geneticist on top of a neurologist, cardiologist, GP, pain management doctor and others who have to step in periodically, like an orthopedic surgeon. I have to see no fewer than four doctors a month. If I don't keep a close eye on my heart, I could get in trouble.

I also deal with swelling from blood pooling in my feet and hands, as my heart doesn't pump blood efficiently. Usually when this happens, I'm even more fatigued than usual and can't keep up with even the simplest things, like walking around my house or being awake or doing chores.


Being a mother is difficult. Being a wife is difficult. My whole life has changed.

What brought this on was reading this story: 18-year old girl faces rare connective tissue disorder

This girl goes through a lot more than I do, even though she has the same disease and the same type of EDS that I do. I have anywhere from three to 10 dislocations a day. Many people, like Jodie, can suffer up to 20. Or even more. Five of her organs have failed. So far, mine are hanging on, though they're not working like normal people's. She is really an inspiration. Read the story.

My wish in posting this is not to get sympathy, but for others to gain some understanding. I would love it if doctors studied this disease more. My doctors were clueless about it, which is what took me so long to get a diagnosis and the help I needed. I don't want others to have to go through that in the future. I know too many people for whom it took 10 times as long as it did me to get a diagnosis.

What the hell is up with my name?

OK, so I've gotten so many questions about what the hell is up with my name. Lemme explain.

Every once in a while, I reference my parents, and instead of saying "both of my parents" I say "all of my parents". And people either give me a funny look or make a funny look emoticon on Facebook. I don't understand why this is such a strange concept in today's society, when the divorce rate is so high. I have four parents.

I don't like this whole step-whatever thing. I haven't really ever embraced it. It's probably because my stepfamilies treated me like their own. I was never treated like a stepchild. Or a stepsister. I have nine siblings, and I just call them all my brothers and sisters. Some are step. Some are half. One is my full biological brother. But to me, they're all my brothers and sisters. Same as with my parents and extended family.

So I have loyalties to both my birth name and my stepfather's last name. I've used both names in the past, for various reasons, and I've incorporated both of them into my legal name, which I keep private because I've never wanted to hurt anyone's feelings. I love both of my families. That's why I've used both names.

The reason I put them both on Facebook recently is because some of my old friends who know me by both names said they couldn't find me because they didn't know my married name. They stumbled across me seeing my picture on other people's profiles. So I added them in to make it easier for people to find me. Simple explanation. There's your answer, people.

Insomnia is a nasty little booger

I remember when I was younger, I would wake up in the middle of the night and see my dad sitting in his recliner watching TV. It could be 2 am, 4 am, whatever. It didn't matter. He routinely got up in the middle of the night to do something, whether it be watch TV, read a book or cut his toenails.

AUTHOR'S NOTE - You may not ever know who I'm talking about when I address my parentage. My parents divorced when I was 5 and both quickly remarried. Therefore, I call all of them my mom and my dad. So I could be referencing step-parents or biological parents. It never mattered to me. At this stage in my life I love them all and consider them all my parents. If it matters to the story, I'll point out the difference.

So, anyways, my old man got up in the middle of the night a lot. I used to wonder what the hell his damage was. He could be sleeping!

My dad, if he were much younger, had hair and weren't eating Cheetos and drinking beer while doing his TV watching.

If he wasn't asleep, you ask, how were you awake to observe him? Sigh...

It's amazing we're not biologically related. See, here I'm bringing it into the story. This is my stepfather of which I'm speaking. I, too, suffer from this Godawful problem. I get up in the middle of the night and do crazy things like write blog entries about what my dad does while he's awake in the middle of the night and clip my toenails.

Doctors tell me it's because I'm getting older. Pssshhh... I say back to them. Seriously. I do. Was I old when I was 8 and still couldn't sleep? I ask them that, and they stand around like idiots saying things like "well" and "um."

Pills fix this problem. Unfortunately, I have the tolerance of an ox. So while one Ambien might impair a regular person enough to keep him from driving a car, it takes four or five Ambien to get me to sleep through the night. No doctor in her right mind (mine included) would prescribe this much sleep medication to someone. Lawsuit waiting to happen.

This is what I imagine my insomnia looks like. He pops up to say hello anywhere from midnight to 4 am.

Of course, I've been in pain my whole life, too, because of the genetic disease I have. That doesn't help at night, when you're lying on a bed and your joints start shifting out of place from your muscles relaxing and not holding them in (our connective tissue is loose and doesn't hold our joints in like normal people's does). So sometimes getting up and moving is the only release from the pain that I have.

The point of the story is, someone please develop a pill for those of us who have to take five Ambien to sleep!

This whole 50 Shades of Grey thing

I know I've been posting a lot of links about how much 50 Shades of Grey sucks, and I still think it sucks, but the point is it's had a big effect on the culture of the U.S.

So I'm currently working on a feature story about it for a parenting website from the angle of it being dubbed "mommy porn".

I told you to stay out of the bathroom while Mommy's busy!

I want opinions from people who loved it... and why. I want opinions from people who hated it... and why. If you feel the need to contribute, I may or may not use your comments, but I'd appreciate everything I can get. I have plenty of info from the Interwebs, but being a former reporter, it's hard to shake the impulse to get ACTUAL quotes from ACTUAL people.

I hate Chick-Fil-A

Okay, so most of you probably see the title of this post and think it has to do with all the anti-gay sentiment coming from Dan Cathy, the fearless leader of CFA, as it will henceforth be called (because I hate typing dashes).

Not so. At least it's not at the top of the list. I think CFA's food is nasty. I always have.

I mean, seriously, does that look appetizing?

Everyone I know is nuts for it. And all these nuts clog up the entrance to my Super Target while they wait 17 cars in line at the drive through when they could just get their lazy asses out of the car and go in and get their waffle fries.

And all of these people who are self-professed CFA devotees are now tortured because they don't want to support a business who thinks gay people shouldn't get married. Where, oh, where, will they get their precious waffle fries?

All hail the mighty waffle fry.

Here's an idea. Get them at the grocery store. They're in the frozen aisle. Then you don't have to deal with people. I hate people.

OR, novel concept, just buy 'em at CFA. From what I understand, the whole of CFA does not support Cathy's statement. Do you think the guy who cooks your waffle fries thinks gays suck? Maybe. But if so, he always thought that, and you always got your waffle fries from him.

Also, from what I understand, and call me out if I'm wrong, Cathy's own money goes to support anti-gay groups. Not CFA's business money. So if you buy at CFA, you aren't contributing money that goes to these groups. Unless you count the money that pays Cathy's salary, which I wouldn't. Everyone gets a paycheck and gets to do with it what he pleases.
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As much as I don't like CFA, I also don't like the people who are up in arms about this. CFA has long been known as a religious business. They are closed on Sunday so their employees can go to church. Is it any surprise that their leader doesn't support gay marriage? When I heard the collective gasp of WHAT?!?!?!?, I was in shock. Seriously, people? This was a surprise?

Now, I teased some of you in a Facebook comment earlier:

It's been a year since I left my job at the San Antonio Express-News, and I'm obviously still in reporter mode because I have kept my lips zipped about this Chick-Fil-A debacle - and everything else politically related. As Hearst employees, we were not allowed to show political favoritism in any way, from signs in our yards to bumper stickers to Facebook posts. That is still my natural inclination. I have some very serious thoughts about everything going on politically right now, and I might or might not share them. It's finally occurring to me that I'm in business for myself, and myself doesn't care if I open my big mouth. I'll mull this over a bit. I just didn't want anyone to think I was a political idiot because I never comment on anything even remotely political. It's just habit. I used to not be allowed to have opinions. Now I'm allowed.

So, here goes. I finally get to express my opinion about something political. I support gay marriage. I have friends who are gay with families. Two of my best friends are a lesbian couple, and they are a beautiful family with their son. I have a very close family member - whom I'll keep private because I'm not sure if she wants me to talk about her in my blog - who is in a very long-term same-sex relationship, and they have a beautiful little girl. Their home is filled with light and love, and I adore all three of them. They are a family. These two are only the beginning of a list that could go on forever. I have gay people in my life whom I love and treasure, and I want them to have the same rights I do.

I used to think it was just about marriage, and I thought, you don't need the piece of paper. Have a ceremony, put a ring on your finger and be married between the two of you and whatever God you believe in. But that's not it. These wonderful people have no rights to make legal decisions for each other, even though they live in long-term committed relationships with each other, many of them last much, much longer than married straight couples I've known. If I were a lesbian and in a committed partnership, and I'm as sick as I am, my partner would have no legal right to make medical decisions for me. And my parents have not demonstrated that they know enough about my disease to make proper medical decisions for me. How scary would that be? 

Of course, this is but one political issue in the world today, but I had to start somewhere! 

 UPDATE: After more thorough research, I discovered that CFA's charitable division has donated amounts in excess of $1 million to organizations that hold anti-gay sentiment. My prior argument still stands. It's their company and their right to do what they want with their funds. If you don't want to contribute your money to the company, seek out your waffle fries elsewhere. And I keep saying waffle fries because I can't for the life of me think of anything else CFA serves except for those nasty biscuit nugget thingies I posted a picture of above. Shudder.